Guardian article today that might resonate here

[thedevilinablackdress]

https://www.theguardian.com/science/2026/mar/28/burden-of-extended-care-for-aged-parents-new-phenomenon

I’m mildly prejudiced against surgeons. I think in order to do surgery at all, you have to have a kind of tunnel focus and drive that works against the sort of (GP) holistic consideration. Where the system breaks down is when GPs have neither the time nor the resources to do the kind of doctoring that includes seeing/knowing the patient and the family, looking at the whole picture and recalling in some cases years of conversations about ‘what makes it all worth it is… (seeing my grandchild get married, still being able to swim in the sea, phone my sister every day etc etc) and therefore to have the knowledge of when it’s time to hold back from invasive treatment with lengthy recovery times.

I’m fascinated by this Carandache!

I watched my DF’s slow demise until the age of 95 and am determined not do the same to my offspring.

I am late 50’s and try and keep healthy in all the usual ways, but when the time comes I will be refusing preventative medicines such as statins.

I hadn’t thought about refusing breast scans, smear tests, etc.

I actually think I would want to know if I had the beginnings of a disease and then plan accordingly, but you’ve definitely given me a lot (more) to think about.

Thank you.

I don't really look on this board much anymore

But it's a good thing I saw this thread

It's really made me pause and stare down the horror that this might go on for another 10 years

So I need to plan accordingly

It's incredibly frustrating because I have spent eight years - or wasted eight years - and that's including the time I had my nervous breakdown - trying to deal with this. But the decision you make are never based on someone in their 80s actually getting better!

It's incredibly frustrating that I can't plan anything properly in relation to mum's care because there has been no consistency over the last eight years

I generally get annoyed because when I'm not around, I feel as if my mother relies far too heavily on the neighbours for things to be done. This spoils my relationship with those neighbours who I consider to be my friends - and I don't have a lot of friends so I don't want to piss them off.

There's a whole bunch of stuff that's far too complicated to explain but anyone who has an elderly borderline functioning parent will understand. The last time I tried to give myself a break, she talked about getting rid of the carers because she was feeling so much better. This really bothers me because then she'll need them again and she'll say she's not in a fit state to sort them out and it will be me trying to sort out carers - again.

It's just so relentless. The only thing I can think of to do is to only do the visits where I'm actually needed to do something.

There's a lot of talk on here about spending quality time with a parent - there is no quality time when you just resent all of it. I don't want to go round there just to hang out!

I accept it would be tragic to end up with a bad relationship at this stage, but I can't see a way around it and I can at least get some time back in my life. I'm not looking to do anything major with that time. Just some peace and quiet would be nice.

I also find that when I see her less, I find her even more annoying - it's like having a normal life punctuated by the sudden shock of seeing her. Or I get out of practice at doing the tolerant bit.

Thank you, if you have read this far.

Another smear test and mammo dodger here. I'll only get checked if I have symptoms of something. When I did get mammos in the distant past, I think I nearly died of fright when called back, and then it was all ok. So many false positives putting people in fear.

I won't/don't take statins. Too many side effects and I've seen quite a few people come off them because they just made them miserable.

I do look out for things health wise and try to keep myself in an ok fashion. But I'm not worked up about living to 100 either and I doubt I would even with all the drugs in the world that we are told to take.

I didn't take HRT either, well I didn't need it, no symptoms I was lucky, but am always told I should have. Why?

And so on. Living will, POA all done.

I think so many of us on here understand the relentlessness of it, the frustration when you spend time and effort putting things in place for them to be thrown away as ‘not needed’ when they truly are, or ‘not possible’. I had a few nights of good sleep when DM was in a home for respite, and I knew she was safe and looked after, that I could go and have a chat with her and spend quality time without managing a million things to keep her safe at home. She was so much better and seemed happy there. That literally lasted a few days and she won’t consider it again.

The prolonged living of a very low quality life has put the humble heart attack up in my estimation.

I may be inclined to take up smoking, drinking and cream cakes in my 80's if I'm still about. Hasten things along a bit.

@toffeeappleturnip I am thinking drugs as well, although it may be difficult to source them as an octogenarian. I slightly regret not trying cocaine in my youth so this would be a good opportunity to rectify that gap.

@rookiemere Yes why not. Go out with a whirl.
Perhaps the Grandchildren could be of service . . .

Thanks everyone

perhaps I shouldn't worry about what I say to her because I think everything I say bounces off anyway! They really are like Teflon at this age. And I've been saying that for a long time...

Teflon indeed!

I once heard a doctor on TV advise people to take up smoking at 70. Not to shorten their lives (though that might be a bonus given the horrors of dementia) but because he maintained that nicotine protected the brain against deterioration. Anyway, they'll probably have been outlawed when I get to that age.
My NDN is 88 and smokes like a train and is as sharp as a tack, whereas my mother who always looked after her health is just slightly older with advanced dementia and has forgotten her grandchildren.

I read about this guy a couple of years ago. He's coming at it with with more medical depth and examine of ethics than most. He reviewed his stance in 2024 when in his 60s and didn't change.

In an article in The Atlantic from 2014, noted bioethicist and oncologist Ezekiel Emanuel, MD, PhD, wrote that he will refuse all medical interventions including antibiotics and vaccinations after age 75. The logic of his position is likely out of concern over a loss of autonomy and dignity associated with aging. Dying younger is intended to preserve one's legacy to be remembered as vital and not decrepit.

www.medpagetoday.com/opinion/unchartedterritory/103426

I'm "only" 45 and helping to look after my Dad with dementia and supporting my mum who is the main carer. What it has taught me is that there is absolutely no way I will let my daughter do the same for me.

What we do as society is not caring, it's the opposite. My dad has expressed his wish to die but we can't enact it. We are keeping people alive against their wishes. And it costs both the individual and society a fortune.

I am already planning how I will end my life when I can see it going south. I have already considered the steps to access euthanasia. The option to quietly opt out of all the early prevention stuff seems very sensible to me.

On the really hard days I am sometimes jealous of those who have lost their parents quickly and painlessly, a quick heart attack or dropping dead seems like a blessing. I do realise that this is a bit grass is greener ans the grief, pain and shock of it must be dreadful, not being able to say goodbye etc.

But would you really rather have to watch your parents lose themselves, be in pain for years, juggle the pressures of looking after them alongside full time employment, parenting a teenager. And all the guilt that comes with that. I know what I would choose.

I’m the same @Fizzyrosie. I started looking after my parents at over 8 years ago and now have just mum in a care home with advanced dementia. I don’t do the actual caring but the emotional toll as she declines is growing. I already have my plan as to how to end it for myself at about 80 - based on the decline in my parents that seems about the age I am likely to need to do it.

A friend had a dreadful shock last summer when she found her mum dead on the floor at home at 78. I have had my mum an extra 15 years but much of those haven’t been good years. Right now I barely remember the good times we have had together. All the memories that spring to mind are of dementia. And whether it happens overnight or over a decade or more the end result is that you lose a parent.

I completely agree. My friend found her dad collapsed in his rose garden, secateurs beside him. She dialed 999 and they said another few minutes would have been too late. So he got another 2 years, bed bound, blind, and died alone of covid. If she had the time again she would have waited.

Nowt wrong with mum's legs. It's her brain that's failing. Don't see how mechanical legs help someone who has no idea what time of year it is or who doesn't recognise people she's known for decades.

"the one wearing the garish makeup and the outdated scarf – telling the same self-serving stories of her misspent youth that she has been telling everyone for 60 years. Boring not one, not two, but three younger generations: a multi-generational bore."

Did this article need this hateful passage? Out dated scarf?
And would a man get described in this way?
I understand the burden of care only too well, but this society is getting more selfish and disrespectful by the minute. There's being honest and there's being nasty. The press encourages it.

This has happened to our neighbours - the parent didn’t answer the phone in the morning which was nothing unusual, just thought they’d gone to the shops. When the call wasn’t returned in the evening they went over - massive stroke and ambulance people said they'd probably not survive. But they have, can’t move, can’t speak, doubly incontinent, very limited vision. This was over a year ago now. So hard on them when they have young kids too.

This was MIL. FIL had gone out for the day and found her collapsed when he got home. Massive stroke left her paralysed, incontinent, non verbal and suffering seizures. She survived nearly 9 years like that.

I think you are right. And it's not fair. It's the reason that I can't take reasonable care re. eg. cancer screening. My father survived cancer to die of dementia. It was terrible. He became so strong and violent and desperate he broke a carer's arm. His sane younger self was a shy, bookish man.
Never ever do I want his last years of life to be repeated by me for my own dcs. Anyone who let a dog or a cat get into the state my df did, or my MIL who weighted 5st and didn't know her own name in the end, anyone who left an animal suffering like they did, would be would be condemned as cruel.
I can't understand it.

My dad had a massive stroke at 85, was left paralysed and unable to speak. The doctors were talking about transferring him to another hospital and doing surgery on him. Thankfully (I know that's the wrong word, but honestly) a scan showed more bleeding in the brain and we had the conversation about the end of life protocol, and agreed to it, knowing he'd had a long life and would not wanted to have been left a helpless invalid. Such a strong independent man, the thought of him suffering for years as you describe your MIL is horrific.

9yrs! Good grief…I won’t mention that when I next see them! But could easily be them too - they’re “only” mid 70’s, and nothing wrong with them except the effects of the stroke. The horror. I would hate to be in that bed myself…

MIL was 76 and had walked a mile into town, met a friend for coffee and gone shopping in the morning. Sorry.

@Fizzyrosie I really feel for you

I was 42 when everything kicked off. I don't know - maybe I just expect too much from life.... but I can tell you that I felt very young when it started, in a good way, and mostly I don't feel my age unless I factor in my mother. I'm 50 now. Can you step back?

it's really sad to hear these stories after heart attacks and strokes. It's always been so strange to me that people expressed fear of dying from one of those things. The problem is if you don't die of that thing.

I also think healthcare is very complicated going forward - it seems entirely based on preventing death. Actually getting a doctor to do something that balances your quality of life, in my case that obvious thing is getting them to prescribe tranquilizers or sleeping pills, seems impossible. All they care about is screening for things and prolonging life.

my mum was actually told to have a pacemaker a few years back - she told them very bluntly that she didn't want her life being extended and they really didn't like that. Because otherwise, what is she supposed to die of?

She also had something on her lung that they wanted to investigate further because they thought it might be cancer - again they were deeply unhappy when she said to them that she didn't want further investigation. They didn't ask why she had the scan but if they had asked, the answer would simply be because they wanted her to have it

I think there's probably a lot of elderly people having things that they feel they can't refuse. The scan happened when she had an actual problem, but her problem was stomach related and I never understood why she had the fuller scans or how she ended up with a lung CT specifically

they could've just tried her on the stomach med in the first place! None of the treatment pathways seemed to make any sense. I've had a lot of experience with both parents in the health system, and it seems things were better in the 2000s and the 2010s? Not sure if anyone else feels like that.

@EmeraldRoulette I agree things in the health system seemed better in the 2000s and 2010s.

Now many things are more separate which is a nightmare with a multitude of co-morbidities and trying to coordinate. My theory is the fear of litigation has created boundaries around areas of responsibility so it’s hard to get anyone to see the needs of the whole person.

Everything is on a system now but not always on the same system.

I had several conversations with different NHS departments about changing address and no we can’t record your Lasting Power of Attorney (just bring it with you when you join the person for every appointment).